For little Braveheart Myrrah Shapoo, the past five years have been a tale of tribulation and triumph.

When her cancer returned in Jan 2015, a bare 30 months after she was first diagnosed with ALL – Acute Lymphocytic Leukemia, with no clear road map of what was driving her disease, Dr Amita Mahajan her treating doctor at Indraprastha Apollo Cancer Institute, encouraged the family to take their daughter to the United States — specifically, to New York–Presbyterian/Columbia University Medical Center — where a group of pediatric oncologists was developing a new, personalized approach to treating cancer by conducting an extremely detailed analysis of each patient’s DNA.

ALL is a cancer of the blood — specifically of the white blood cells. Typically those cells work with the immune system to fight infection and protect the body against disease, but in children with ALL, an uncontrollable proliferation of cancerous white blood cells upsets the delicate constitution of the bloodstream, crowding out normal white blood cells, as well as red blood cells and platelets. This makes it impossible for the body to properly fight infection, absorb oxygen, or heal wounds.

Acute lymphoblastic leukemia is the most common form of cancer in children. Its survival outcomes in the developed Western world is as high as 90% - and even in India – in the best of cancer centers 70-80%.

For weeks physicians worked with scientists, geneticists, cellular biologists, and molecular pathologists. First the identified a mutation in gene NT5C2. This mutated gene does not cause cancer, but it can derail a patient’s treatment by making leukemia cells resistant to certain chemotherapy drugs, including 6-mercaptopurine, or 6-MP.

Myrrah had received 6 MP every day for nearly two years, from the spring of 2013 through the end of 2014.

And then weeks later through still further DNA sequencing they were able finally identify a rare genetic mutation as the cause for Myrrah’s blood cancer’s relapse. One entire gene in chromosome 9 had been folded back onto its neighbour so that their nucleotides mixed to create a hybrid gene known as NUP214-ABL1. The finding was all the more remarkable because it pointed to a specific treatment strategy. A drug called Sprycel was added to the traditional chemotherapy cocktail she was receiving, and the doctors needed to continue giving her the drug for as long as it took to wipe out any remaining cancer cells. This followed by a bone marrow transplant with bone marrow from her older brother Ruhayl and by spring 2016 there were no more cancer cells in her body.

Today Myrrah is back at school and living with her siblings and Mom Rubina in New York, closely monitored by the Columbia Team of Doctors who are the best of her friends.

Sajid came back to India determined that children in India, deserved no less. And if there was one place to start then it was with better diagnostics. He donated the funds the family had raised for Myrrah’s treatment to Cankids, and pushed Dr Mahajan, Myrrah’s first treating doctor and the Medical Chair and founder Board Member of Cankids Kidscan – National Society for Change for Childhood Cancer in India to start a Minimal Residual Disease (MRD) Project.

Currently virtually all pediatric ALL patients and a large part of adult ALL cases in Western countries are being monitored with MRD techniques to assess treatment effectiveness and assign patients to MRD-based risk groups – standard, intermediate and high risk leukemia. MRD can predict chances of relapse and -can stratify treatment, escalating to intensify treatment or de-escalting to reduce toxicities and costs of treatment depending on the test result.

Over a period of 10 months in 2017, 264 children with ALL received free MRDs in 12 centers in North and West India. 60% of these children had high risk Leukemia; on a spend of Rs 25 lakhs so far.

CANkids Kidscan – National Society for Change for Childhood Cancer in India – has been supporting patients with ALL for treatment since its inception in 2004. In 2017-18 to date, of the total new cases registered under its YANA – you are not alone – holistic care program, 4853 , 1691 ( 35% ) had ALL. Today

This 15th February, on International Childhood Cancer Day, in its 14th year, Cankids has launched a focused project on “Awareness, Advocacy and Patient Support for ALL. The aim is to improve survival outcomes and to ensure the quality of life and care for children fighting ALL and their families in India.

Poonam Bagai. Chairman Cankids said “We did not start a project any earlier. The numbers are large. IT is estimated that of the total 70-80000 new cases of childhood cancer diagnosed in India each year, 30-45000 would be diagnosed with ALL and a large % would be high risk ALL. In the 1980s and early 90s a seminal protocol called MCP 841 and improvements in supportive care had led to an increase in survival rates from less than 20% to 60% in 3 leading centers. There were many protocols being followed in the country and no uniformity or clarity, in terms of standards or guidelines. In a survey we conducted in 2014, of 62 centers and respondents, there were as many as 9 different protocols, with further variations.”

Recent efforts by the Indian Pediatric Hematology Oncology Chapter’s research arm - InPOG on promoting clinical trials and the development of a national multi- center ALL trial called ICICLE, led by Dr Vaskar Saha of Tata Medical Center Kolkata, are welcome developments that will improve outcomes in the next 5 years.

Myrrah is the inspiration behind a Golden Crab ALL Fund. She and her friend Risa have named the Fund. Her parents Sajid and Rubina Shapoo together with 3 other ALL parents Rabani Garg, Dr. Manish Agarwal and Malika Raghuvanshi, and 3 ALL childhood cancer survivors and ambassadors- Shubhangi Sharma, Krishang Raghuvanshi and Aditya Sharma have joined forces with ALL treating doctors in India and overseas to spearhead the effort. .Says Rubina Shapoo, a former television journalist and now a certified health coach “This project is a medium through which I want to give back to the cause only for my daughter and Cankids. We want outcomes of ALL upto 85% in India like they are here in USA.”

According to an article by pediatric oncologists - Drs Ramandeep Arora and Brijesh Arora, the focus needs to be on treatment abandonment through holistic care, reduction in relapse through risk stratification and adapted regimens of treatment, and prevention of metabolic and infectious complications and reduction of toxic deaths through systematic improvements in supportive care, addressing malnourishment, strict infection control policies and adequate transfusion support.

“Also important is collaborative effort and stake holder engagement at regional and national levels, “ adds Dr Amita Mahajan, Chair of the Cankids Board Medical Committee. “it is this that has made the difference in other Low Middle income countries. With all that is now going on with ALL in the country and the efforts of scientisits, insitutions, NGOs and parents and survivors coming together, we will see a marked change in the coming years.”

Cankids has launched the ALL Golden Crab Fund and project this 17th International Childhood Cancer Day for improving ALL outcomes and quality of life and care for kids with ALL in India. It’s in line with the theme “Advancing Cure Transforming Care”